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Meet Javier and Miguel with their friend V'Lesha Wilcox of the Northwest Texas Chapter.  This picture was taken at the 2004 Annual Meeting.

 

Click here for more pictures!

 

The boy are much older now...click link above to see most recent photo!

 

 

 

 

2 can be fun a lot of the time since there are many things that just 1 can't do by themselves.  Javier and Miguel have each other to play with all the time.  They also have someone their age who understands what it's like to have MG. 

 

2 is always

better than 1

 

Javier and Miguel were both diagnosed with MG within just a few months of each other.  They are sharing their experience to help other kids and parents to learn more about MG.  All kids out there with MG now have Javier and Miguel as a friend who understands and that makes 3 better than 1!

 

Hello my name is Javier William Bermeo and I have had Myasthenia Gravis since I was eighteen months old. I have a twin brother, Miguel De Jesus Bermeo, who also has Myasthenia gravis.  This our story of how we were diagnosed and how we are today!

 

Four years ago on May 8, 2001, Daddy and Mommy left Miguel and me with Aunt Jackie while they went to dinner. When they left everything seemed to be normal.  When they returned from their dinner date, Aunt Jackie questioned Daddy about me.  She asked if I had fallen earlier in the day. Mommy and Daddy replied no, and that I had been fine healthy with no problems.  My Daddy being a physician assistant and Aunt Jackie also being in the same field, noticed I had developed exotropia in my left eye during the two hours they were gone. Daddy thought it's probably just a lazy eye developing. But, by the end of the night, I had also developed serious ptosis and my eye was completely shut.  

The next morning, Mommy took me into the pediatrician.  The ptosis was gone but the exotropia was still very visible.  The pediatrician did a check up on me and dismissed the problem as normal, that it was really no big deal.  He set up an appointment with an optometrist for a month and a half away. Mommy left upset, because she knew something was wrong with me, that this doesn't just happen over night. 

After the appointment Mommy rushed over to see my Daddy and neither one of them were satisfied with the doctor that day.  Luckily, being in the military and in the medical field, my daddy was able to get us an appointment with a pediatric optometrist the next week. My appointment was the following week on May 15. 

 

By the time Mommy and Daddy met with the optometrist, my eyes had progressed. I was showing endotropia in my right eye and I had developed serve ptosis in both eyes. Dr. Mary O’Hara (Pediatric Optometrist Brook Army Medical Center San Antonio TX) thought it was a third nerve palsy, because my symptoms had developed so rapidly, Mommy was beside herself.  The doctors where telling her that I would probably have a tumor on my brain and this is the reason for my symptoms.  Instantly Mommy broke out in tears.

 

Mommy, Daddy and I were at the doctors office for five hours doing extensive exams.  Then we where rushed to a children's hospital across town for an emergency MRI.  If it was a tumor, Mommy and Daddy were told the quicker we find it the better.   That evening I was checked in the hospital and had to fast for the procedure, which was scheduled the next morning at 6 am.  I remember all Mommy did in

between rocking me from hunger pains was pray, (I was 18 months old at the time). Neither one of us slept, and my Daddy was trying to find out himself what was wrong with me. 

 

It was morning and at 5:30 a.m. the nurses came in to prepare me. Mommy and daddy were allowed to walk down with me. My daddy was the only one allowed in the room to put me asleep, and in the MRI unit. My daddy came out to the waiting room with Mommy and Uncle Dwayne.  The three of them paced the floor and prayed and waited.  It was two hours before they could see me and the procedure was over. We went back to my room and waited another six hours before we heard any results.

 

By now a Pediatric Neurologist by the name of David M. Suhrbier MAJ. USA MC had my case.  He concluded that there was no tumor but that he needed to do more research and would find Mommy and Daddy an answer.  We stayed another night for blood test and observation. By the next day Dr. Suhrbier came back with what he thought might be a diagnosis.  He released me and sent me home with some info on what he  was thinking  and spoke with my daddy. 

That following weekend, Dr. Suhrbier called Daddy at home and said Myasthenia Gravis. Daddy had heard of this disease.  The week of May 21, Daddy and Mommy and I met with Dr. Suhrbier in his office at Brook Army Medical Center.  He reviewed with Daddy and Mommy  the disease and went ahead with a procedure called the TENSILON Test which was positive for Myasthenia Gravis.  Now I was diagnosed and my life with MG began.

 

I had to go through a CT scan to check my thymus. If it was enlarged then that would be hopeful.  Remove it and maybe I would healed, the doctors said.  But, the CT scan found my thymus to be normal. By now I was 19 months old and treatment with Mestinon began. At first it was .6ml every four hours.  Through out the night Mommy and daddy where working in shifts to wake each other up and give me meds.  Also the doctor proceeded with patching my eye to try to strengthen the eye muscles but that just made it worse. Daddy and Mommy discontinued the procedure.

 

In July things where going good and I was just on mestinon. (In August of 2001 Daddy (William) was transferred to Fort Bragg, North Carolina) After the move Mommy notice that I was becoming weaker than my twin brother Miguel. I would get tired and take naps more frequently. We were schedule to see new doctors in September and knew the fatigue was part of MG. Daddy and Mommy had not expected Miguel to show signs of Myasthenia Gravis. But Sept. of 2001 when Miguel was 22 months old almost over night he started to develop the exotropia in his right eye and ptosis by the next day to where the eye was shut.

 

This time, knowing what to expect, Mommy and Daddy took no chances and had him seen the next day by Dr. Larry Andreo, Pediatric Ophthalmology WOMACK.  He Examined Miguel and concluded with the diagnosis of Myasthenia. Then plans were made for both of us to be  seen by Dr. Donald B. Sanders at Duke  University Medical Center immediately. Our Family met  with Dr. Sander's  and  Miguel and I had to be examine again and retested the blood work.   Both blood test came back positive for the antibodies that indicated Myasthenia.

 

Daddy and Mommy began treating Miguel with mestinon and discussed other options for me. Miguel has just ocular Myasthenia but I was generalizing. I wasn't running as fast or keeping up with Miguel. There was a big difference in my strength and I was always tired. Daddy and Mommy worked with Dr. Sander's on adjusting the amount and times of medication until they found a dosage that I could handle and would work.  Miguel was fine as long as he took his meds.

 

Our family had many visits with Dr. Sander's.  In June of 2002 I had developed serious drooling problems and had a hard time eating. I would want to eat but it would take me so long to chew my food so I could swallow it, that I would get tired and just spit the food out.  I was now two years old and was out of the baby food stage.  Mommy tried pureeing my food, blending it into a shake, and at times even sat down and feed me by hand which become routine.

 

During our visit in July Dr. Sanders discussed other options for me with my parents besides the mestinon. They discussed steroids and thymectomy. Daddy and Mommy thought I was two young and small for steroids, so they decided on the thymectomy and went on with the plans. With the help of Mrs. Bernadette Lipscomb, RN, my surgery was schedule for August  7,  2002.    Mommy and

Daddy prayed every night hoping they made the right decision. The surgery was successful and I recovered quickly. The next day my eyes where perfect but that was short lived. Daddy and Mommy knew it would take at least two - four years to see if the decision they made for me was the right one.

 

Today Miguel and I are five years old. Miguel still has ocular with no signs of generalizing.  But, he has developed more ocular MG symptoms, double vision, and has started having ptosis on his left eye, especially when he is tired and sick. Since my thymectomy I have been growing and gaining my weight back.  But, I still have severe ptosis most of the time especially when I'm tired and it's hot.  On the up side it's not everyday. I have at least four good days a week where my eyes look great during the day, but by night they are tired. 

 

When we go out, my Mom still gets comments that your boys look so tired they need a nap. But, she will stop them and correct them and explain Myasthenia Gravis to them right there. I still have days when I'm weak and fatigued and just to tired to move.  At night Miguel and I wake up with pains in our legs, but I can eat now with no problems.  I haven't drooled since the surgery and I can push myself all day to play with  my brother and run faster  or even with him at times. So, I am improving.

 

The biggest fight my parents have now is to get the school board in our county to listen about MG and beware of it when we start school next year. I think with all the support Miguel and I have been blessed with, it  will be fine. Thank you to everyone who has helped us and to our family and friends! This is our story and I hope you enjoyed it!

 

If your parents would like to talk to our parents they can e-mail William and Ashley Bermeo at JAMW4@aol.com .

Javier and Miguel at Daytona Beach during the 2003 Annual Meeting.

 

 
 

   

 

 

Miguel, & Javier Bermeo are pictured here at the 2009 National Annual Meeting.  The twins were diagnosed at age of l8 months.  They are growing so fast, and Miguel is in remission, and hopefully Javier will soon follow.  They are exceptional young boys, and a joy to be around.   Mom, Ashley, is the contact person for parents of other children with MG!  She can be contacted through the National Office!

 

 

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